Living with PMDD and Endometriosis: My Experience with Hormonal Hell

*content warning: suicide

Hormones are one part of the complex biological forces that run our bodies. They have a much bigger part to play in who we are than we give them credit for. Hormones affect more than just reproduction—they influence sleep, growth, metabolism, digestion, stress response, and, most noticeably for me, mood.

I have PMDD and endometriosis, and, as such, have struggled for years with various hormonal symptoms. Now, endometriosis isn’t a hormonal disease, it is an inflammatory one. However, endometriosis does affect your endocrine system – the part of your body responsible for making hormones.

While there’s no conclusive evidence linking endometriosis directly to PMDD, my lived experience—and that of many others—tells a different story. PMDD (pre-menstrual dysphoric disorder) is a more severe form of what many know as PMS (pre-menstrual syndrome). But, in my experience, many women who have endometriosis or other hormone-related diseases like PCOS will find that their symptoms of PMS are much more intense than what should be considered ‘normal’.

PMDD is underdiagnosed, and PMS is often downplayed, especially in patients already dealing with chronic conditions like endometriosis or PCOS (polycystic ovarian syndrome).

So, diagnosed or not, for the purpose of this article, I am going to refer to these extreme symptoms as PMDD because PMS just doesn’t cut it. Also, even if it isn’t PMDD, the overlap is so strong and the funding is so low – I think it would take the medical system years to label whatever the hell is going on with us women.

What is PMDD?

PMDD is a premenstrual dysphoric disorder. Now let’s break that down. ‘Pre’ meaning before, ‘menstrual’ period, ‘dysphoric’ very unhappy, ‘disorder’ disruption to normal functioning.

PMDD: Before your period, you become very unhappy, and your normal functioning is disrupted.

Now symptoms are similar to PMS but are much more severe.

PMDD affects between 3 to 8% of the population; however, it doesn’t take a genius to realise that it is likely much more, but too many women have given up on the medical system due to its relentless gaslighting and poor treatment . So, I imagine this number is much greater in reality.

Symptoms are much more severe and debilitating than PMS.

They include:

·  Emotional:

• Mood swings, irritability, depression, anxiety
• Loss of interest in joyful things
• Brain fog, fatigue, and insomnia
• Overwhelm, tearfulness, emotional dysregulation

·  Physical:

• Breast tenderness, bloating, joint/muscle pain
• Acne, headaches, water retention, and appetite changes

My experience with PMDD and Endometriosis

For me, it depends on the cycle. Sometimes I have a good month, other times I will be full crazy lady.

At the worst of my endometriosis symptoms, when I was in hospital twice a month with crippling pain I could feel through the morphine, my moods were horrific.

I felt so depressed, so anxious, and so apathetic that I became suicidal. I would always wonder why sometimes I would be completely fine, I would be happy, adventuring, doing life, and then I would just have these phases where nothing brought me any joy. It didn’t help that I was being gaslit by doctors who thought I was bulimic.

The psychologists thought it might be bipolar due to the swings between highs and lows. Now I feel so mad that they were so ignorant that they didn’t consider hormone-related reasons.

Two weeks happy, two weeks sad is not bipolar, it’s a hormonal cycle!

I was put on antidepressants that didn’t really work, followed by different ones, and then changes again. All numbing me to some degree, never fully feeling like myself. None of them really stopped the entirely out-of-control feelings that I experienced leading up to my cycle.

Later, when I had the Mirena in and took the pill as well as being on antidepressants, I still experienced these moods. I would be totally unmotivated, going to the kitchen sink to do a few dishes felt like climbing Mount Everest, I would cry when I saw a puppy because one day it would just be a dog and its owners wouldn’t love it anymore, I was irrationally agitated, and a cloud of deep sadness followed me, gripping me with pain and stifling the joy inside me.

What does PMDD feel like emotionally?

PMDD for me felt like being in your body but not in control of it.

• I would know that I was being irrational.
• I would know that my feelings had no basis.
• I would know that I was angry over nothing.
• I would know I was more than capable, yet entirely stuck.

Yet despite my knowing. I felt utterly powerless to shift myself out of these moods.

It is like being possessed.

You still know it’s your body and your mind, but there is this overriding entity that is controlling your feelings and responses, and you end up a passenger in your own body.

I might have had a bad experience with a friend, they had let me down or something. I know cogitatively that I am hurt, but that this experience is not a true reflection of our friendship or my standing with others and has no impact on my worthiness within myself.

Yet PMDD me would not only feel heartbroken by this instance, but also spiral to the point where I wouldn’t want to see anyone ever again. A friend could invite me to their birthday, and I would be filled with existential dread.

I’d feel that ‘no one loves me’, ‘everyone hates me’, ‘people just invite me to things because they don’t have enough friends and need to bulk out their birthday parties’, ‘that everyone else there at the party who I know isn’t even a good friend either because they never come to anything when I invite them’. This is the kind of ridiculous self-talk that rolls around my head when I am experiencing PMDD.

At War With Myself

I know none of this is true, yet not only do I think it, but I feel it. I really don’t want to go to the party. It’s like being at war with yourself.

PMDD me: And what is the point anyway? We are just on this earth for a short time to grow and experience, and what does a birthday party matter anyway? It’s just fleeting joy, mostly from materialistic means.

Actual me: That isn’t true, going to the party gives love, you can gain connection, connection is a positive transfer of love, which is why we are here on this earth. Without giving and receiving love, that’s where there is no point.

PMDD me: But I have no love to give, I’m empty, numb, I’ll just be faking, and everyone will know I am off.

Actual me: You know you are better than that. The moment you get there, you will be overwhelmed with the love you have for others and the connections you can share, and you will feel fine. Even if you are a bit off, it doesn’t matter; it is human, and going is a testament to how strong you are.

Now this is a soft version of how PMDD can impact me, and the back-and-forth war that needs to go on to just do life.

The Severity of Negative Thoughts

I have experienced such crippling anxiety and stress before my period so horrific that I couldn’t get off the couch. Even if there had been a fire, I don’t think I could’ve moved. I couldn’t put my feet on the ground, I couldn’t get up. I was frozen. And with this feeling, I also felt trapped, scared and entirely helpless.

I have lain next to my kind, loving husband in bed before and thought to myself. ‘If he died, I don’t think I would feel anything. ’ Not only untrue, but the severity of this thought is upsetting in itself.

I have also felt so unmotivated, so scared, frozen, dysregulated, that I wondered if the Queen of England came to visit my house, I didn’t think I could even be interested enough to get up and open the door. For context, I think the Queen was pretty amazing.

PMDD feels like you have no control over your own emotions and are being controlled by a simultaneously numb yet hurtful spirit wanting you to sit in one spot and petrify rather than feel any love or joy.

What PMDD and Endometriosis Feel Like Physically

I don’t have as many symptoms as I used to, but they can still be extremely uncomfortable. Now this list is excluding the obvious endometriosis symptoms and just focusing on the PMDD, but of course, there is overlap.

Skin & Digestive Symptoms

For starters, my skin gets worse, which is disappointing as it feeds into my general sense of low self-esteem during this time. Then I bloat. Everything I touch hurts to eat, yet all I want are chips and chocolate. Then, my bowel habits change, and nothing works right for ages.

Nightmares & Sleep Disturbances

I often have nightmares, I don’t know if this should have been in the emotional section, but for the week leading up to and sometimes during my period, I have vivid nightmares. I will wake up exhausted from running away from a murderer playing cat and mouse all night, I will be disowned by my mum, or be bullied by some random characters.

Leg Discomfort & Restlessness

My ankles and calves feel like they are going to explode! It doesn’t seem to be visible, but it’s like fluid retention that is so uncomfortable that I feel as if the pressure builds up in my lower legs will simply split them open. I can’t get comfortable, I can’t stop moving, fidgeting, massaging. The pressure stops me from sleeping and hurts to walk like I’ve gone too hard on leg day at the gym.

I get restless legs. This is different to the pressure I feel in my lower legs. It’s like a punishment invented by someone who wanted you to lose your mind slowly. I feel having it daily could certainly drive you crazy. Restless legs are like having a thousand ants crawling under your skin, and you are unable to escape.

It is like that feeling when you are so uncomfortable sleeping on one side because you have been there for so long, you feel you absolutely have to move, and if you don’t move immediately, you will just combust because you just have to move! But in your legs… for hours… no matter how much you move! It is a constant need to move and stretch, and an absolutely frustrating degree of hatred when nothing helps. It often kicks in at night and will keep you up for hours!

Ouchy

Tender breasts. I don’t just get sore boobs; I get such sensitive breasts sometimes that bras feel like vices and the movement from walking feels like I have a bowling ball hanging from the giggling them around. Ever had anyone poke a bruise? It’s on steroids! They ache, they feel swollen, and the fact that they even exist on your body is a point of pain.

I feel like a peach, not the cute kind – a bruised, soft, aching peach that has rolled out of the truck, bounced along the highway and then been promptly run over by the following car. I ache like I have a mild flu, my muscles hurt like they’ve been overstretched, and my joints feel rigid and stiff.

Fatigue & Brain Fog

It isn’t tiredness, it’s fatigue. It is a level of tiredness where you would have to excuse yourself from your dinner party to sleep. It is that toddler-level tired where you can’t even function or process thoughts. It is a loopy level, I might leave the stove on, set the house on fire, level of fatigue.

Brain fog is so frustrating! It is like being a smart person stuck in a dumb articulation model. Or if you’re a computer person, Brain fog feels like being a high-end computer with a huge hard drive full of information, but with an overheated processor and barely any RAM. Like the data is all there, but trying to open a file takes forever, and switching tasks makes everything freeze.

You aren’t crazy, weak or just moody – you’re fighting a hormonal battle

Women get such a bad rap for our moods. Yet, I would imagine if men experienced what we did, they would be exactly the same (well, worse because they aren’t built to handle it, but hypothetically).

It is important to understand where their moods are coming from. Because for years I thought I had anxiety and depression, and now I look back, I don’t think I ever actually did. I think it was simply my hormones that the whole time.

Being treated for mental illness when it’s actually a chemical illness makes you feel like you are at fault, like you can’t cope, like you aren’t strong enough. And that is entirely untrue.

I have worked a lot on my mental health and managed my symptoms much more in recent years, but I still experience these things. I just find that they do have less of an impact on me now. I have learnt so much about how to get myself out of these scary states that I finally feel like I am myself, most of the time. Not some crazy controlled hormonal psycho.

That isn’t to say I don’t still struggle overcoming these imbalances – it is a huge thing to overcome your chemicals. That’s like asking someone to not be attracted to the person they are attracted to, or not to laugh the way they do.

Our chemicals, our hormones, they, in a large part, make up who we are. But that doesn’t mean that it has to control us.

We have the power to overcome anything we decide to, and it may take work, it may take years, or it could shift in a moment for you. But never feel alone. Never feel like you are crazy.

There is nothing wrong with you. There is likely just something a bit off about your hormonal balance. You might just have PMDD.

If this sounds familiar to you, and you think you might have PMDD and endometriosis, know that you’re not alone. There’s help out there—don’t be afraid to advocate for yourself. Share this post with someone who needs to hear it.

If you are interested in reading how the prospect of coming off the Mirena, click here.

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